Congestive Heart Failure and xPap Therapy

-SWS wrote:So you might call or even visit sleep labs in your local area, as if you were a "field investigator" on behalf of your mother's health. So put on your socially lucrative and most congenial mannerisms as you fish for crucial CHF treatment answers for dear mom.

Well, here's an interesting possibility -- most of my Mom's doctors are associated with the Ochsner Foundation, here in New Orleans, and there just happens to be a sleep center associated with that hospital system, which I found on the URL you so kindly provided.

I'd suggest that you not explicitly ask if they happen to have a cardiologist or pulmonologist who knows how to work with ASV. Heaven forbid that you should stumble across a cash-cow business who will tell you want you want to hear---only to get dear mom in the door so they can bill handsomely as they do things in their own set mediocre ways.

Ghod forbid! I have PLENTY of experience with people who tell you what they think you want to hear when it comes to sifting through food items and making sure they don't have any of the things which I can't eat. It's amazing how people will tell you anything... but when you ask them to put it in writing, on corporate stationary, it suddenly becomes an impossibility.

Rather, I'd ask each sleep lab if they happen to get a lot of CHF patients. And if they do, I'd ask just what kinds of therapies or treatment methods they typically end up with. Then I'd ask them exactly how many cardiologist or pulmonologist sleep docs are diagnosing and treating those CHF patients----and which one(s) they candidly think are really good with out-of-the-ordinary CHF challenges.

Ah! I was wondering how to phrase the questions. Medical practitioners can be sensitive to certain approaches, as evidenced by the number of folks here on this board who have found themselves at cross-purposes with the people supposedly assisting them in finding an optimum therapy.

Your mother just may be a somewhat out-of-the-ordinary CHF patient as you adeptly pointed out. And don't forget to ask those forthcoming labs, who very honestly say they don't treat many CHF patients, if they happen to have recommendations for good CHF doctors or labs in your area.

Well, I have no problems with asking for a recommendation. And I am happy to give recommendations in exchange.

I have, btw, established that there isn't a smaller probe for the CMS 50-F, so I guess I'm stuck with trying to persuade Mom to leave that one on her finger. Wonder how long it needs to be on there to get usable data?

KiralynX,

I must say that your replies to us all area credit to you. very warm and insightful.
Just my thanks to you for your input to the forum via your own thread here. It is a pleasure to read your responses to us all.

Cheers

DSM

Kiralynx wrote:

-SWS wrote:So you might call or even visit sleep labs in your local area, as if you were a "field investigator" on behalf of your mother's health. So put on your socially lucrative and most congenial mannerisms as you fish for crucial CHF treatment answers for dear mom.

Well, here's an interesting possibility -- most of my Mom's doctors are associated with the Ochsner Foundation, here in New Orleans, and there just happens to be a sleep center associated with that hospital system, which I found on the URL you so kindly provided.

Here's the MD line-up at the Ochsner sleep labs, Kiralynx:
http://www.ochsner.org/find_a_doctor/re ... anguage/0/
The one cardiologist/pulmonologist on their roster is Dr. McGrath in Baton Rouge. She's a pulmonologist.

If you can somehow politely get Dr. Stranova's ear, he's probably going to have a pretty good inside track of who happens to be treating CHF/SDB patients in your area with ASV (look at his administrative background related to both sleep and cardiology):
http://www.ochsner.org/news/story/ochsn ... new_hires/

This Tulane University sleep-doc/pulmonologist sounds both integrative and forward-looking regarding cardiopulmonary treatment:
http://www.som.tulane.edu/pulmdis/thammasitboon.htm

This DME company working out of New Orleans sells ASV machines, and should know of local doctors who are ASV-knowledgeable:
viewtopic.php?f=1&t=28063&p=241428&hili ... ns#p241428
-and-
https://www.hmssleep.com/cpap.html

Louisiana Academy of Sleep Medicine:
http://www.lasmnet.org/

General cardiologist search tips:
http://www.cnn.com/2008/HEALTH/06/24/he ... diologist/

Again, good luck.

-SWS wrote:Again, good luck.

That's an IMPRESSIVE collection of URLs, and a great resource to continue researching on this. Super thanks for it!

I actually got out to do a round of water therapy today and am feeling loads better for it. (Well, 10 hours of sleep with no apneas, no hypopneas, and only 2 periodic breathing flags didn't hurt matters, either.) So I'll be better equipped to continue.

I did contact my respiratory therapist, the one who had the smarts to recommend my Bipap Auto SV for my CSDB, and asked her, as you suggested, about physicians that they work with. Her immediate thought was (like yours and Muffy's) to start with the NOX, and her company does them all the time. It also turns out that Mom's primary care physician orders them fairly frequently. She said all it took was a faxed prescription to them, and they would deliver the device to the house, set it up, and come pick it up in the morning -- Dad wouldn't have to worry about going to get it or get it back to them. They would then DL the device and fax the report to the doctor. I will have to make sure that they send me a copy of it, as well. Dad would have to approve that.

Dad's insisting I stay home tonight, but I will be going over to sit with Mom for a few hours tomorrow while he runs errands. Hopefully, I can broach the idea of the NOX to Dad then.

And, I may have had an opportunity to follow up on some of those very useful URLs.

dsm wrote:I must say that your replies to us all area credit to you. very warm and insightful. Just my thanks to you for your input to the forum via your own thread here. It is a pleasure to read your responses to us all.

Doug,

I value all input, even if it points to a path which is not one I choose to take at this time. My primary hope in posting this is to gain information which will help my Dad, my sister, and me make very necessary decisions -- and to provide a guideline for someone else who may face similar issues. As I said, my chief concern here was to distinguish between the hypothetical and the real-world issues facing a critical care situation.

It is also a warning, both to long-term folks, and newcomers, of the incredible seriousness of untreated sleep apnea. Unlike my Mom, who is now bed-ridden, I plan to be dancing and swimming on my 87th birthday!

Kiralynx wrote:

dsm wrote:I must say that your replies to us all area credit to you. very warm and insightful. Just my thanks to you for your input to the forum via your own thread here. It is a pleasure to read your responses to us all.

Doug,

I value all input, even if it points to a path which is not one I choose to take at this time. My primary hope in posting this is to gain information which will help my Dad, my sister, and me make very necessary decisions -- and to provide a guideline for someone else who may face similar issues. As I said, my chief concern here was to distinguish between the hypothetical and the real-world issues facing a critical care situation.

It is also a warning, both to long-term folks, and newcomers, of the incredible seriousness of untreated sleep apnea. Unlike my Mom, who is now bed-ridden, I plan to be dancing and swimming on my 87th birthday!

My mother passed away aged 87 a few years back & she had been a classic snorer (shake the walls) - I had mentioned this in another thread some time back where we discussed the probability that some forms of dementia could well be caused by long term undiagnosed OSA. Mother just kept forgetting more & more in her last few years although she was actually physically healthy. When she died the staff at the nursing home said she appeared to have decided one day to stop eating & within 2 weeks she was gone. I have long believed she could have lived longer had OSA been better understood & more widely treated 20 years ago.

I easily empathize with your situation.

DSM

dsm wrote:I have long believed she (my mother) could have lived longer had OSA been better understood & more widely treated 20 years ago. I easily empathize with your situation.

Indeed, and I think my mom would be in much better shape, likewise.

I, for instance, wish that my CSDB could have been discovered back when the pain issues started. Of course, the fact that this was four years before CSDB was even defined would have made that a trifle difficult.

On this Forum, we're doing a tremendous amount of discovery and education. As the late Snoredog observed, "One day, science will catch up to what I'm saying..."

KiralynX
I will be very interested over time, to hear what you think of your ASV therapy. I know for me it has made a significant difference & is providing a consistency thus far I wasn't able to get from my earlier units (cpap auto bilevels).

In the past 6 months have been able to lose 13 KG & am well on the way to a new target of below 80KG total (another 5 KG). I have not had the ability to sustain the effort before & I attribute it to the more consistent daily well being since taming the ASVs.

If others consistently say they are seeing better than average results, that will be interesting.

Good luck with that water therapy

DSM